Hello everyone, I'm not sure if I should post this on Ask a Doctor or if anyone has any input/ I'm having weight loss surgery in a few weeks and several months ago when I met my surgeon, I privately disclosed to him that I had HIV to be safe. This was a choice I made as I could have taken the risk and not disclosed but I am very, very private about my status. I thought that when I told him I stressed that it was a very private matter and that I was hoping it would stay on a need to know basis. Yesterday, when I went to do my pre op testing, I noticed he had put that I had HIV on my medical charts and people who were doing my ultra sound, pulmonary tests, EKG and just lab techs all had that information. So I called him and said that I didn't expect he would have made that so public for people who really didn't need to know now know. He said once I told him it becomes part of my medical record. Now I'm not sure If I made the right decision. My employment information is part of my history with the hospital and these days NOTHING Is secured. People can take that info when they leave or people can hack into the system etc.. I'm really discouraged now and not sure what to do. If anyone has any suggestions or input, I would love to hear it. Thank yhou

I recall when I was diagosed for only a few years, I had to get some surgery done. I told the nurse wheeling me to or . Then another joined her and she was whispering to her about my Hiv status. And when the first nurse replied out loud, " Yes I know , paitient told me" it sorta empowed me. So now When ever I need to disclose I fine that the information is taken as just additional infor. Nothing more, nothing less. Have I had concern about where is info could end up? Sometimes. But then I put it into Gods hands, whom I trust with all my being.And its been over 20 years, no problem.

--------------------Look up to the Heavens for the answers to Lifes questions .

I disclose to all. Doctors, dentists, barber. What they do with it is not my business. Ignorance and fear will make some act/react in a "bad" way. I do not care. I do not want anyone with whom I have a chance of "occupational exposure" to get this infection from me. So far I haven't had any issues. In fact, I have been complimented and thanked for disclosure on occasion. Most medical questionnaires and histories have forms which list HIV. I simply check the box.

I know when I found out I was pos and in the hospital with PCP I was alarmed at how many people had access to the records and tests, pretty much everyone who came in from doctors to nurses aides. I did raise it with the ID about whether any of the records could not be seen by the variety of hospital personnel. he said no. It bothered me a lot as I was still sorting through my own feelings. But of late, I have disclosed to the dentist, opthalmologist and gynecologist -who oddly did not list HIV on her info form. As of yet, I have not had a problem.

Thanks for all the replies. I think this really is an important topic and not because I started it Everyone has their own views on it but I've thought about it for the past few days and have come to the conclusion that I regret disclosing. If the hospitals had a system where only the people who need to know such as anyone operating on me, I'm fine with them knowing, but that doesn't seem to be the case. Everyone affiliated with the hospital has access to my records and let's not even start with people hacking into systems and stealing personal information. In addition, my employment information is also part of my records. If this ever got out to my employer, I'm sure I would lose my job and career. I live in a right to work state and they are smart enough to not fire me for HIV but they don't have to even give a reason. I'm probably just very paranoid but I don't like that I put myself in this position. The only 2 issues I needed to address was if I would be able to swallow the Atripla pill after my surgery and if there would be any negative reactions between the Atripla and the anesthesia. But I could have answered those questions through my own research. Anyways it's something to really think about before disclosing in my opinion. I'm hoping after the surgery I can request to have my medical records deleted or taken out of the system. At the very least, I'm hoping they can take out my employment information, On a final note, all medical workers treat every patient as if they have a contagious disease as far as what they wear, I've been told this my several doctors and dentists and have observed it so I don't feel I would be putting anyone at risk. I'm glad that is their procedures. Many patients could have something and not know it so if I was a medical worker I would treat every patient the same and protect myself, The person who is really at the greatest risk, is the person who discloses in my opinion.

I have been POZ for over ten years. My diagnosis was first picked up by a dentist, who had picked up the connection between my oral health and HIV. My status was confirmed with blood work. I had full blown AIDS, a CD4 count of 10 and a high viral load. I started on meds and within three months I was undetectable. I have remained undetectable since and am still on the same basic meds that I started on ten years ago. In recent years I had oral surgery. Before I proceeded, I asked for a private conference with the oral surgeon. I explained my status, as much for my peace of mind as for the safety of those working on me. The response was in the form of some follow-up questions. "What is your viral load?". "Are you on blood thinners?" "When was your last ID doctor visit?" After that, I was given a reassurance that regardless of my status or the status of any patient, universal precautions are taken these days, for obvious reasons. Since then, I have shared my status with any caregiver who might come into contact with my blood or body fluids; even the people at the lab who draw my blood or handle urine or fecal samples. Most recently I shared the status with a massage therapist, though possibility for transmission was low. From years of being HIV+ I have lost body fat. I work out regularly. So look moderately muscular and vascular. Some might wonder why I lack body fat. Sharing the status answers a lot of questions. Also, if this massage therapist was the least bit uncomfortable in working with me, I wanted to know that up front. In the end, it was not an issue. HIV, while still a bit scary, is not as big of a "scarlet letter" as it once was. I wouldn't say that I am proud to be POZ. But I can say that I am not ashamed to be POZ. I am selective about sharing the information with friends, co-workers, etc. Those people are not bound by HIPAA regulations. It is true that health information may not be as secure as we would like. But don't anticipate a problem. Just take the best care of yourself that you can. And try not to stress. God forbid that your status leaks out and you are confronted by your employer, make sure that you know where to go for legal counsel in your area. If you have a local support group, take advantage of it. They can help you not feel so alone and also advise you and calm your fears. Living POZ for ten years, I am older, retired, still working part time, and doing anything I want. And I only surround myself with people I love and trust. And those people include my caregivers. Will keep you in prayers, that you may have peace of mind. You are not alone. Do not be afraid.

One more thing that I noticed. Someone above made reference to dealing with an ophthalmologist. Make sure that you have your eyes checked, preferably by an ophthalmologist who is familiar with the eye problems of HIV+ individuals. This becomes more important when your CD4 drops below 200 and you may be prone to more infections. You should have a "baseline" eye exam and retinal exam and make sure that you get your eyes checked annually. I have a wonderful ophthalmologist, who specializes in HIV eye problems. When it was well past my annual recall date, and I finally showed up, his question was, "What it something I said?". We both laughed. It was due to a screwup in scheduling at the eye center. I think that you will find that most of your caregivers are in the profession for the right reasons. They are not there to judge you. They are there to help. And if you don't connect with one, find someone else. And remember that you are not the first HIV+ person to show up on their doorstep, nor will you be the last. Fear not. Hugs…….

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